A genetic test for Tay-Sachs revealed surprising results—and helped my husband and me discover what Judaism means to us

Being tested for a genetic disorder is usually not a laughing matter, but that’s exactly what we were doing when my husband had his blood drawn to see if he, like me, was a carrier for Tay-Sachs. His being tested was a formality for us as Jewish prospective parents. We didn’t take it seriously because we didn’t have anything to worry about: Matt had been born and raised Catholic in a rural town in northeastern Pennsylvania. He converted to Judaism before we got married two and a half years before. He had told me that loving me meant loving everything about me, including my Judaism. He had told my parents that he felt a resonance in Judaism that he had never found in Catholicism. He had told our rabbi that he felt personally committed to helping ensure that there would be future generations of Jews in the world, to parent and raise Jewish children of his own. And yet Matt’s commitment to his new faith didn’t alter the statistical improbability of his being a Tay-Sachs carrier.

Which is why we were shocked, stunned, speechless when we learned that he was a carrier. Not just because of what that test result meant for our efforts to have children, but because of what it meant beyond that: My husband, the Jew-by-choice, had been Jewish all along. Genes don’t lie; a genetic counselor told us that Matt had, without a doubt, a specifically Ashkenazic version of the mutation that causes Tay-Sachs.

The news was explosive, but also revelatory. While my husband found himself obsessed with discovering the origins of this long-buried family secret and strangely comforted by a new feeling of understanding with his connection to Judaism, I felt like I was, in many ways, meeting my husband, and my own sense of my faith, all over again.

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My connection to Judaism was deeply rooted in the Holocaust when I was a child in Atlanta. Both my maternal grandparents were survivors. My grandfather, an only child, had spent years in concentration camps and emerged from the war an orphan. My grandmother, one of seven children, had hidden from the Nazis in the dirt under rose bushes, been put into a concentration camp, escaped from a concentration camp, and ultimately constructed an alternate identity for herself, pretending to be a Catholic so that a non-Jewish family would take her in until the war finally came to a close. Pretending to be Catholic had saved her life: Only she and one of her brothers survived. She had lost her parents, her siblings, her nieces and nephews. After the war, she told the family she had lived with that she was actually a Jew. They didn’t believe her.

Years later, we were a family that talked openly about the war, adopting a Mel Brooks-esque sensibility where making jokes about the Nazis would be our triumph over them. It was the best way we knew of telling the story of our own survival, of covering up pain, of hiding suffering.

In watching my husband discover Judaism and build his own relationship to it, I found a new way to connect to my faith and the role it played in my identity. In Matt, my Judaism became about more than the Holocaust. Through him, I was able to use my Judaism to look forward and build something new. Matt’s conversion was about what lay ahead. On the day of his conversion over three years ago, I wiped away tears as I stood on the other side of the walls of the mikveh, listening to him shout the Sh’ma loud enough for everyone to hear. Here was someone who saw the future in Judaism, not merely the past. My husband was able to be Jewish in a way that acknowledged the history of our people without being constantly weighed down by pain. His choice to be Jewish let me imagine a Jewish family of my own: warm Shabbat dinners, building a sukkah in our backyard, elaborate Seders meant to excite and enthrall a younger generation.

After we found out about Matt’s genetic heritage, we both slipped down the rabbit hole of Ancestry.com and JewishGen.org, slowly piecing together his family tree, side-by-side on our laptops, swapping our latest finds. After three days of digging, we were still without any answers; we had hit a roadblock because we didn’t know Matt’s paternal great-grandmother’s maiden name. Ultimately, a search on Ancestry for her first name, birth year, and immigration year yielded only one result: an Ettel Davidowsky who had married a Sigmund Ujfalussi. Ettel had immigrated while still a teenager, seemingly without her family, but with many others from her village in Hungary: the Cohens, the Buchmans, the Jaffes, the Sternbergs. Suddenly, we had a very logical explanation for Matt’s family’s seemingly absurdist tradition of eating matzo ball soup at Easter dinner.

We learned that his paternal great-grandparents had come to the United States from Hungary before the turn of the last century, stopping first in Vienna, then London, then New York before ultimately settling down in Pennsylvania. They had made the same identical journey three years apart: Matt’s great-grandmother coming over first, her husband following after her. They married in the States. We do not know what brought Ettel and Sigmund here. We do not know how they knew each other back in Hungary. We do not know what family they left behind. We do not know why they decided to forgo their Jewish faith as they entered their new country. We do not know why their first child died at the age of 3, though we do speculate now that perhaps she had been born with Tay-Sachs.

Matt called his parents to ask them if they knew anything about this, trying to phrase things as delicately as he could. He told them he was undeniably genetically Jewish, that his great-grandmother had a Jewish last name, how his great-uncle could be found on JewishGen.org. “We’re not Jewish,” was all his dad had to say in reply, never again speaking of the topic. He couldn’t believe him. And yet Matt still found himself feeling nothing but relief, a explanation handed to him overnight that made his journey to Judaism all the deeper and more resonant. Once I overcame my initial shock, I found in our news so much for which to be grateful. I saw blessings everywhere: that we had hadn’t been able to get pregnant on our own and thus avoided having conceived a child with Tay-Sachs before Matt had ever been tested, yes, but also that I had chosen a partner who was so willing to acknowledge obvious pain in his past and still choose joy and choose his Jewish faith.

It turned out that Matt’s past wasn’t that dissimilar from my own. Through learning that we were both Tay-Sachs carriers, we learned that we also shared a history of loss. We both came from families that, at some point, felt they could not live the lives they had born into. My grandmother felt the need to hide behind the façade of Catholicism during the Holocaust, before returning to her life as an observant Jew. Matt’s great-grandparents, for reasons we will never truly know, felt the need to do so their entire lives. There was a greater connection between us than we could have ever known: Together, we could acknowledge a history of pain and choose to let it live comfortably in our own lives, a companion and a reminder, rather than a weight. From Matt, I have learned that all Jews choose to be Jews every day. That history informs the present but doesn’t have to define it. I saw my grandparents in my husband, suddenly: people who had lost something, but had chosen to make a new life for themselves on their own terms.

In deciding how to go about building our Jewish family and avoid the one-in-four chances of having a child who would be born with, and die from, Tay-Sachs, we have chosen to undergo in-vitro fertilization with pre-implantation genetic diagnosis. With PGD, our embryos will be biopsied and tested for Tay-Sachs before transfer, thus ensuring that only nonaffected embryos had a chance for implantation and eventual birth. There had been more than enough suffering in our respective pasts, in our people’s past. We felt compelled to do our part to stop the hurt of another human life before it even began. If we are not able to conceive through IVF, we will try to adopt.

Though our Tay-Sachs revelation has revealed to us a shared genetic past, it has, more than anything strengthened our understanding of and commitment to our desire to create a Jewish family. Our genes may not lie, but they also do not define us. My husband is no more or less a Jew now than he was before he knew he was a carrier. He chose to be a Jew, in the same way I, born a Jew, have chosen to live a Jewish life. We know we want Jewish children and a Jewish family. And we now know that having that is not a matter of biology, but of choice.